Month: May 2006

I got an SMS message from a friend of mine who happens to be the head of my group in Singles For Christ. We had our weekly meeting the night before. He invited an old friend of his to join us. His friend was looking for a group to join to hopefully uplift her spirituality and faith.

Our meeting went very well. I was able to share some, ok a lot of the life lessons I’ve learned dealing with Pompe. Apparently she liked them and helped her a lot.

She sent a message to my friend thanking him for inviting her and sharing that she felt better after. She mentioned that she liked what I shared and that in a small way it helped her.

That felt really good. I’m glad that through the struggles I’ve gone through and continue to do so, I learn things that I’m able to share with other people. Somehow it manages to help them. That’s good.

A life lived making a difference to other people is a life worth living. Glad I can live a life like that. Glad I could help.

One dozen infusions.. Wow. How time flies. I came back from the hospital last night for the 12th infusion. The interval between the 11th and 12th was shorter this time due to the adjustments we had to make on the 11th infusion.

The night before was uneventful like most, so I won’t bother writing about it anymore.

I was waiting for my doctor to start the infusion. I was chatting with the private duty nurse and my aides. I was also alternating watching basketball on tv. Spurs vs. Mavs (Mavs won to advance to the west finals). My doctor walks in the room. Trailing behind her was one of the residents I had a crush on. I kept on with the converstation I was having trying not to notice her. I didn’t want to seem surprised or eager to see her.

As fate would have it, the resident was the one who inserted the line. She did a good job. One shot deal. The line was inserted with one try. After that she left to tend to other patients. My regular doctor was perplexed as to why my heart rate was up. She was looking at the cardiac monitor intently. She asked me if I was ok and if I was feeling bad or something like that. I told her no. I pointed out to her that my heart rate was probably up due to my crush… Hahaha.

Anyway the whole infusion went well. No major problems of hiccups. At this stage I’m still quite nervous. I’m not sure why. Maybe because to me every infusion should be taken seriously. I shouldn’t be complacent and take things for granted. This is after all still a very new treatment and all the side effects haven’t been fully documented.

I thank God for days like this when all goes well. Looking back, after 12 infusions I must say I’m doing better. Even if it’s marginally better. Better is still better and that is good.

A reporter from one of the more popular T.V. stations came by last Thursday to interview me. She wanted to do a story on Pompe. Although it wasn’t really assigned to her she said she was at liberty to submit stories to her boss and maybe it could be aired.

As long as it’s for Pompe I usually do the interviews. It’s to help build awareness here in the Philippines where Pompe is really unknown, at best a footnote in medical books. A lot of people have not heard of it so when opportunities like this come, I take it. In a small way, it’s my contribution to the Pompe community.

The interview went well. It was shorter than some of the ones I’ve done in the past. It hasn’t aired yet and I haven’t seen the final product. I hope it comes out well.

Funny thing though… One of the last few questions that the reporter asked me was something like.. “Do you ever think you’ll consider getting married? Having a family?” In my mind, I wanted to reply “If you say yes, then yeah I’ll probably consider getting married”. Hahaha. Let’s just say that the reporter was really cute. Of course I didn’t say that to her. Not with the cameras rolling. Plus I didn’t know if she’d take that well. She might have slugged me and it would have been caught on cam.

I just answered as truthfully as I could, saying that I really don’t know if I will. Only God knows the answer to that. If it were up to me, I’d like to get married and have a family. There’s nothing more I want than that. But I guess I have to consider things seriously and to add to that I have to find someone who can understand what I’m going through.
I’m not closing my doors to the possibilty. I’ve always believed that there’s always hope. We’ll never know what will happen in the future.

I’m preparing myself though for the reality that I may never get married or have a family. I just have to accept that if it’s God’s will.

I hope the interview comes out well and that the reporter does a good job with it. Pompe awareness is really important for me. I hope it gets the message across.

This should have been posted a long time ago, seeing that I’m off for my 12th infusion tom.

My 11th infusion has been the most different so far. Instead of having it on a Tuesday as I regularly do, I had it on a Thursday. The main reason being that I had to attend my grandfather’s funeral ceremonies. He wasn’t buried though. He was cremated.

So I checked in Wednesday night. It was the longest check-in period we’ve had to go through. For some reason everything didn’t go well. My dad was really irritated. He was the only one who came with me since my mom had to take care of other things related to my grandfather. Anyway we were finally able to check-in past 8 p.m.

The infusion day didn’t go as planned either. The resident who inserted the I.V. line couldn’t do it with one go. She tried twice and failed both times. She got another Dr. to do it. The other one did it in one go. To be fair, the first one was a pediatrician so I have to cut her some slack. The other one was an internist so he’s used to adult patients.

The infusion pump almost fell to the floor. It was a good thing my Dr. was alert and caught it. Whew! Otherwise our hospital bill would be a tad higher..

All things considered the infusion still went ok. I find that it helps when people keep talking to me. It takes my mind of the infusion process and thus calms me. I sometimes get nervous and my heart rate goes up as a result. I can really be nervous at times..

I’m a creature of habit and I guess I noticed all the bad things that happened as a result. I always want things done in routine. So the change of schedule and pace made me worry a bit more.

My Tita Stella and her now husband Wayne got married last saturday. This week has been bitter sweet for our family. Bitter due to the death of Lolo. Sweet because Tita Stella got married.

It’s both their second marriage. I hope this time it’s forever. They’ve been together for several years already and this was the logical next step. I’m really happy for them.

In his speech during the wedding reception, Wayne said something like, “people have been telling him, why get married now? he said from where he was standing, why not??!?”. I also asked him prior to the ceremony if he was nervous. He said, no. It was the surest thing he’s done so far. It feels right.

I felt flattered that they asked me to give a thanksgiving prayer during the civil ceremonies. I hope that they liked the prayer that I gave.

All in all the wedding was great. I wish Tita Stella and Wayne all the best. I wish them enough. Enough of everything they need for their lives together. Most especially enough love to last a lifetime.

We formally said goodbye to Lolo Dick last tuesday. He was cremated that night. That’s what he wanted.

The night before my mom asked me if I could give a eulogy on behalf of the grandchildren. There wasn’t any doubt in my mind as to what my answer would be. However, given what has transpired in the past few years I jokingly told my mom, “are you asking me or telling me?”. She fired back, “I’m telling you.”. I laughed and told her that I was just kidding and of course I’d do it.

I spend majority of tuesday preparing what I was going to say. I knew I wanted to say something from my childhood. Growing up as the first grandchild I had the most memory of Lolo. I wanted a bit of that. I also wanted to apologize. I wanted to say sorry for what happened between us. You can probably argue that I was his favorite, if not one of his favorites. Until the end, he managed to leave me with something. A valuable lesson in life. Something that I’ve already known but forgot. It’s that our time in this world is limited and we don’t know when we will die. It’s best to say/do things you need to while you can. I learned the hard way that I should have swallowed my pride and made things right between lolo and I. My only consolation is that he left me with this lesson.

A mass was celebrated at 5 in the afternoon, followed by prayers and the Eulogies given by Eliza (Lolo’s caregiver), myself and Tito Boy (Lolo’s youngest brother). A final viewing was held for all the mourners. Ever since I can remember, every time I’d go to a funeral I never looked at the deceased. I don’t know why. Maybe because I wanted to remember them while they were alive. However in Lolo’s case I broke that “tradition”. I wanted to look at him for a final goodbye. So at the final viewing I asked to be carried so I can see him. The casket was elevated so I really needed to be lifted.

Lolo was finally cremated at around 8 that evening. My mom, her brothers and sister and some other close relatives and friends witnessed the cremation. I didn’t go. I didn’t want to look. So I took my small cousins back to our house and waited for our parents there. I took the time to bond with them. I never really got close to my cousins because of our age gap. I needed to change that. In a way maybe Lolo’s death will bring us closer together.

Goodbye’s are really hard. Especially if it’s for good. My Lolo (Grandfather) Dick passed away a few hours ago due to complications arising from his diabetes. He had kidney failure already and had been undergoing dialisys the past few years.

Lolo Dick was my mom’s dad. I have found memories of him as a kid. Being the eldest grandchild, I was one of his favorites. Maybe because I was the first one and thus spent a lot of undivided time with him. My brother who’s the second grandchild came four years after me.

He lived a full life. Accomplished a lot of things. I’m sad to see him go. Especially since the last few years haven’t been that good. I am happy though that at least he’s now at peace with our Lord. His suffering is through. His pain is gone.

Lolo, I know we’ve had misunderstandings. Our relationship hasn’t been perfect. My only regret is that I didn’t get to tell you I love you while you were still conscious. I know the past years haven’t been the best. I do love you.

I hope and pray you’re happy there in heaven. I’m sure Lola (Grandmother) is there waiting for you. I’m sure you both will be happy now that you’re together. I miss lola. Give her a kiss for me.

You’re in good hands now Lolo. You’re with God. He’ll take care of you. I’ll see you again one day but hopefully not for many years. I still have a lot to do here.

Thanks for everything. Thanks for giving me my mom. She’s a good mom. I’m sure you know that. She took good care of you. If there’s one thing you did right it was that you raised a good daughter.

Goodbye Lolo. Take care and God bless.

About Fight Pompe

Welcome to my corner of the virtual world. I mainly put up this blog to chronicle my fight against Pompe Disease. A rare genetic disorder. Apart from that I wanted to write about things I've learned going through my experience, stuff I love which includes design and a bunch of other stuff. I hope you enjoy reading my entries. Check out my about page for more details.